J has Autism

19 02 2008

The fact that J has Autism doesn’t define him but it is part of his make-up.  He’s also a great reader, a handsome fella and the best jumper in his class.  He has Autism.

We can choose to say that it’s a disability or say that he is “differently able.” What we call it won’t change the fact that he has Autism. We can call folks who don’t have Autism “neuro-typical” but, it still doesn’t change the fact that J has Autism… we can argue about what causes it– Environment, Mercury, Heredity… but, that’s not going to change his diagnosis.

We can choose to be a community divided and spend our time fighting about causes or whether or not our children need to be “cured”… but, that’s not going to help our kids.

The nature of Autism makes it impossible to have a standardized way of helping these kids (some people object to the word “treatment”). It’s a spectrum. So, our time– the time of those who love and know these children the most– needs to be spent helping them function as contributing members of society, independent, confident and happy adults. I don’t know if he needs to be cured or if he just needs to learn to overcome his challenges.

What I do know is that I’m not going to live forever and it’s my job to prepare him for life after me. If he’s going to need a schedule in order to stay grounded– it’s my job to teach him how to use a calendar, a clock and a note pad. If he is always going to eat white food– it’s my job to teach him how to order off the menu. Hitting is not ok. Tom and Jerry are not real. It is important to brush your teeth and you can’t leave the house in your pajamas. That’s my job…

I feel strongly that better treatments need to be found, a cause needs to be identified beyond shadow of a doubt and if there can be a magic pill that causes his world make sense it needs to be developed. But, I’m not a Doctor, Scientists or Therapist so, it’s not up to me… I can write letters and bug politicians. I can donate to research. But, I’m not going to spend my time speculating about causes and cures when my son needs that time for himself.

So, I’ll say it out loud:  J has Autism. 
He isn’t my “cause”– he’s my son.

Another Debate With NO Mention Of Autism

16 01 2008

How is it that the candidates get off the hook in relation to Autism in debate after debate? We know the statistics: 1 in 150 children born in the US are diagnosed with Autism. It affects more of us than the issues they spend so much time on… I can’t speak for you but, Autism matters more to me than campaign finance reform and Yucca Mountain.

Having said that– if I lived at the foot of Yucca I might feel differently… But, do 1 in 150 children born in the US live in an area that would be affected by nuclear waste? So, why spend so much time on the few and refuse to tackle issues that matter to the many? This is a national campaign.

I ran a search on Google “Candidates Debate Autism” and the top result was mine… what’s the matter here?  I’m looking for answers to the subject that matters the most to me and have to really dig to find out what these candidates believe– as far as what they would do; digging isn’t enough– they really don’t appear to have a plan that would help those of us who are already dealing with Autism.  

Clinton says she’ll find out what causes it– Great! But, J already has it. 1 in 150 already have it. That’s great for future kids and their families. Finding out what causes it may lead to better treatments– even a cure. (Let’s not debate “cure”, ok?)

Humor me here– When the cause is discovered and treatments are identified many of us will need help to access these treatments. Will Mrs. Clinton demand that our insurance, social services, school systems provide these treatments? Or will it be another instance in which only the wealthy few will be able to access it?

What about Autism?

Why aren’t they talking about it?

I understand that the economy is in the toilet. I understand that people are dying in Iraq. I understand that we need to save this planet before we have ruined it beyond repair. This is all very important– VERY important.  But, are any of the issues we are facing as a country more important than this generation of kids? (If they think there is a shortage of soldiers now– wait until 1 in 150 soldier aged people in the US are Autistic.)

How can we get the candidates to talk about Autism?

As I have said before– I am an undecided voter. The issues that matter the most with me are the Economy and Autism.  So far, no candidate has said anything that will keep me from writing in “Colbert.”

Many thanks to those of you who helped me get a question to MSNBC!

Tuesday Debate–Please Help Me Ask About Autism

14 01 2008

I’ve been trying to get a question onto the MSNBC form and keep getting an error message… Could you help me ask the following question– or something like it:

I am an undecided voter. The issues that matter the most to me are the economy and Autism.

What will you do for the middle class insured who can not afford the “extra” services (therapy, equipment) our autistic children need to succeed, can not qualify for assistance because we fall above the income cut-off, and who’s insurance does not cover these needed “extras”?

Here is the link to the MSNBC form http://www.msnbc.msn.com/id/22574335/

From the MSNBC Website: “Watch the Jan. 15th 2008 Democratic Presidential Candidates’ Debate — the first debate since the New Hampshire primaries — on MSNBC TV and MSNBC.com to see if your question is asked.

Brian Williams will be the moderator and he will be joined by Tim Russert.   Natalie Morales will ask the candidates your questions.

NBC News, the U.S. Hispanic Chamber of Commerce, 100 Black Men of America, IMPACTO, the African American Democratic Leadership Council and the College of Southern Nevada will co-sponsor the debate among the Democratic candidates. The debate will take place at the Cashman Center in Las Vegas, Nev., from 6-8 p.m. PST.”

Thanks so much! Please let me know if you were able to get through…. thanks!